Australian National Register of Environmental Sensitivities (ANRES) results for February 2017

Introduction

The prevalence and burden of Environmental Sensitivities are largely unknown in Australia. While there have been a few studies on the prevalence of MCS and CFS/ME individually, there are none that we have found on the prevalence of co-morbid conditions with Environmental Sensitivity. When submissions have been made to Government Departments in the past, the reply has often been that there is insufficient evidence that a large enough number of people live with these conditions to warrant further investigation. This is hindering research, inclusion in the medical curriculum, disability support schemes and access to services. It becomes a circular issue as the lack of consensus amongst the medical profession on the diagnostic criteria for these conditions means that many people do not have a diagnosis and their condition/s are not included in health surveys or hospital records and therefore there is no evidence. Environmental Sensitivities have far reaching implications if left undiagnosed and untreated. It not only affects the health of the individual, it also affects that person’s lifestyle, family situation, financial situation, ability to socialise, ability to support oneself or family, ability to access and utilise facilities such as hospitals, schools, libraries, shopping centres, health care facilities etc. Many people are suffering hardships and continue to be ignored because there is no evidence that they exist, and there are people in the community with symptoms of these conditions who are not diagnosed and do not know what is causing their chronic ill health and continue to be exposed to triggers and develop more sensitivity. The Australian National Register for Environmental Sensitivities (ANRES) was set up to address this need. We wanted to show the Australian Government and Health Services that there are Australian from all around the country suffer from these conditions so as to assist in gaining recognition of Environmental Sensitivities as a disability and facilitate moving forward with issues such as access to medical and disability services.

The results from this study are showing that people with Environmental Sensitivities have a number of co-morbid conditions and are living with significant hardship and difficulty in all aspects of their life from their ability to earn an income, have safe and affordable housing to being able to function in society.

Environmental Sensitivities

Environmental Sensitivities (ES) describes a variety of reactions to chemicals, electromagnetic fields and other environmental factors at exposure levels commonly tolerated by many people. The Environmental Sensitivities included in this report are largely hidden or invisible disabilities in our society. They include Multiple Chemical Sensitivity (MCS), Chronic Fatigues Syndrome/ Myalgic Encephalomyelitis (CFS/ME), Biotoxin-related Illnesses, Fibromyalgia, Electromagnetic Hypersensitivity (EHS), and Fragrance and Food Sensitivities.

The environmental factors that cause or trigger Environmental Sensitivities includes chemicals in cleaning products, perfumes, air fresheners, plasticisers, exhaust fumes, newspaper print and more, in the case of Chemical Sensitivities; Electromagnetic fields (EMF) emitted from mobile phones, wireless technology, smart meters etc for EHS; or mould for Biotoxin related illnesses. Environmentally Sensitive individuals can suffer various degrees of health injury and disability whilst in the built environment, including medical facilities during emergencies.

They become sensitive to substances in the everyday environment at levels well below those considered acceptable to normal people. Productive people suddenly or gradually become unable to tolerate offices, homes, schools, hospitals and public places. Employers may refuse to accommodate people to continue working in safety. Despite skills and education some end up on social assistance, many are socially isolated as they are forced to retreat from places and activities they love. This devastation can extend to loss of spouses, family and friends who may not accept their illness. These conditions have become hidden or invisible disabilities as people retreat from society.

Environmental Sensitivity conditions are known to co-exist. Multiple Chemical Sensitivity is known to co-exist with allergy, CFS , Fibromyalgia, EHS (Meggs et al, 1996; Aaron and Buchwald, 2001; Brown MM and Jason LA, 2007; Caress and Steineman, 2005; Lacour et al, 2005; Statistics Canada, 2006; Gibson, 2009; Gibson et al, 2015; Gibson et al, 2016), as well as fragrance sensitivity and food intolerances (Sears, 2007). Aaron and Buchwald suggest that it is highly probable that the degrees of co morbidity among unexplained conditions are due to a complex interplay between genes and the environment (2001). A study of 727 people, (571 with EHS, 52 with MCS and 154 with both EHS had MCS found that concomitant multiple food intolerances were associated with all three groups. Their study indicated that EHS and MCS are associated with some autoimmune response (Belpomme and Irigaray, 2015). In 2011, Allergy Sensitivity and Environmental Health Association Qld (ASEHA) in cooperation with the South Australian MSC reference group conducted a survey of members with MCS. In this survey the most common co-morbid diseases occurring with MCS were CFS/ME, Gastrointestinal disorders, allergic, cardiac, ENT and skeletomuscular disorders. CFS/ME was the most commonly reported at 74.0% (ASEHA, 2011)

The Ontario Centre of Excellence in Environmental Health report on the Quantitative data in Ontario and Canada showed that the prevalence of one or more Environmental Sensitivity conditions in 2010 was 4.2% of the Canadian population and 5% in Ontario. The conditions studied were Environmental Sensitivities/Multiple Chemical Sensitivity (ES/MCS), Fibromyalgia (FM), Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). Between 2005 and 2010 alone, these conditions rose by 23 percent, 34 percent, and 13 percent respectively. (Halapy and Parlor, 2013).

The features that these Environmental Sensitivity conditions share are that they are chronic, they are environmentally linked and appear with other chronic co-morbidities. They affect the nervous system, and many body organs or systems. As their severity increases, there is generally more co-morbidity and many people have two or more conditions simultaneously. All of these conditions produce devastating symptoms that can lead to total disability (Halapy and Parlour, 2013).

Genuis and Lipp, 2001, have used the term Sensitivity-Related Illness (SRI) to describe the aberrant biological processes that occur when these multi-system conditions such as MCS, EHS, CFS and Fibromyalgia develop. Sensitivity-Related Illness describes a pathophysiological response to the bioaccumulation of substances such as toxic chemicals, infections, dental materials etc from various sources. A hypersensitivity to EMF may have started with a totally unrelated toxic insult or multiple insults in the form of foreign exposures (Genuis and Lipp. 2011; Genuis and Tymchak,2015). This pathway of increasing loss of tolerance has been referred to as TILT (Toxicant Induced Loss of Tolerance) (Miller 2001; Miller 1997). It maybe through this pathway that these multiple Co-conditions develop.

Researching the disease burden of Environmental Sensitivities in Australia is not an easy task and it is even more difficult when investigating the social impacts of the condition/s. This is due to the reluctance by various authorities to legitimise conditions such as MCS as a physiological disease (Dummitt, 2005; Phillips, 2010) along with lack of studies that identify the daily needs of people with Environmental Sensitivities. Brown and Jason, 2007 when studying the functioning in individuals with CFS with co-occurring MCS and fibromyalgia found that participants with three diagnoses experienced the greatest amount of disability (Brown and Jason, 2007). We are investigating whether this is the case in Australians by allowing them to list more than one condition.

As far as we know we are the first to study concomitant Environmental Sensitivity conditions and the impact of these conditions on Australian lives. While these numbers are not large they are representative of the problems and issues surrounding Environmental Sensitivities.

ANRES Environmental Sensitivities register Results.

To date 190 Australians have registered their Environmental Sensitivities on the ANRES website as of February 2017. We have had a reasonable spread of people across all states except Northern Territory. The percentage of registrants from each of the Australian States are 29.6% from Victoria, 25.4% from New South Wales, 22.2% from Queensland, 12.2% from South Australia and 5.3% from Western Australia and Tasmania.

One hundred and fifty-eight (83.2%) females and 32 (16.8%) males have registered. These numbers are consistent with overseas estimates of 80% in women compared to 20% in men (Caress and Steinmann, 2003; NSW Public Health 2003; Fitzgerald, 2008) with women reporting more severe symptoms [Joffres et al, 2001]. The South Australian survey of MCS and chemical hypersensitivity also showed that 90% of females compared to 66% of males report perfumes etc as a chemical trigger of hypersensitivity (Fitzgerald, 2008).

Women may be more vulnerable because they have a higher body fat to muscle ratio than men, and so may have more body burden of toxicants accumulated in their fat. Women’s use of cosmetics, household cleaning activities, and work in jobs such as in hair and nail salons could expose them to chemicals to which men are not as heavily exposed [Lipson and Doiron, 2006]. However, there is little research on the reasons for higher rates of Environmental Sensitivities in women, who are most frequently diagnosed between the ages of 30 and 40, the peak productive years for work and family [Lavergne et al, 2010]. Dr. John Molot of the Ontario Centre of Excellence in Environmental Health (OCEEH) suggests that females ‘are more responsive to their environment via both the limbic and immune systems have a greater body burden of chemical exposures and less efficient detoxification systems compared to men’ (Molot, 2013).

Environmental Sensitivity Conditions

Conditions Registered

We have included Fragrance and Food Sensitivity in this study due to the high number of published literature and anecdotal reports of their common occurrence with other Environmental Sensitivities.

The data shows that MCS at 75.8% is the most reported condition followed by Fragrance Sensitivity at 74.7%, Food Sensitivity at 68.9%, Table 1. We do not know if this will be a general trend or if larger numbers of MCS are registering due to the spread of the ANRES project through the MCS community or it maybe in part due to hypersensitivity in the general community.

The estimated prevalence rates of chemical hypersensitivity in Australia is 7.5% for children 2-15 year old, and between 16% to 24.6% for adults and it is possible that for these people their condition may worsen until it becomes Multiple Chemical Sensitivity. Fitzgerald noted that as there are no diagnostic guidelines for MCS in Australia, it is possible that 1% prevalence rate of diagnosed MCS is due to under reporting of some of the chemical hypersensitivity individuals. Some chemical hypersensitivity individuals had symptomology more aligned with the MCS cases and could represent undiagnosed MCS (NSW Health, 2003, Fitzgerald, 2008).

Chemicals that were attributed to triggering hypersensitivity in adults were perfumes or aftershaves (82.5%), tobacco smoke 42.2%,New building or renovation 40.4%, Pesticides or herbicides 37.2%, Petrochemicals 32.0% Vehicle smoke 27.1% and other chemicals 19.0% (Fitzgerald, 2008). Odours or smells that caused illness in 2-15 year old were Cleaning agents, Petrol or exhaust fumes; Perfumes or aftershaves, Scented soap or shampoo or other toiletries, Scent of flowers such as jasmine, gardenia, wattle, etc, Fresh paint, Pesticides, and Cigarette smoke (2007-2008 NSW Health Survey). These are the same chemicals that cause symptomology in those with MCS.

The high number of Perfume Sensitivity registrations is perhaps not surprising as a national representative survey of over 1,000 Australians showed that one in three Australians experience health problems when exposed to common fragranced consumer products (Steinmann, 2017). In the Fitzgerald 2008 paper, of the 16% of the SA population who reported chemical hypersensitivity, 82.5% attributed perfumes as a trigger of their hypersensitivity symptoms.

Table 1. Environmental Sensitivity Conditions

Environmental Sensitivity Conditions

Number

Percentage %

MCS

144

75.8

Fragrance Sensitivity

142

74.7

EHS

80

42.1

Food Sensitivity

131

68.9

CFS/ME

84

44.2

Fibromyalgia

54

28.4

Lyme Disease &/or it’s co-infections

18

9.5

Biotoxin-related illness

13

6.8

Other

46

31.9

As registrants can select more than one condition, the percentages do not add up to 100%

Conditions by Gender

Although the number of males registered so far is small (32), there seems to be some variation in the conditions suffered between males compared with females, Table 2. What we are seeing is that, like the 2008 Fitzgerald study, where more women than men have perfume sensitivities (Fitzgerald, 2008).

Table 2. Environmental Sensitivity Conditions by Gender

Environmental Sensitivity Conditions

Males (n=32)

Female (n=158)

Number

Percentage (%)

Number

Percentage (%)

MCS

16

50.0

128

81.0

Fragrance Sensitivity

14

43.8

128

81.0

EHS

17

53.1

63

39.9

Food Sensitivity

17

53.1

114

72.2

CFS/ME

12

37.5

72

45.5

Fibromyalgia

6

18.8

48

30.4

Lyme Disease &/or it’s co-infections

4

12.5

14

8.8

Biotoxin-related illness

1

3.1

12

7.5

Number of Co-morbid Environmental Sensitivity Conditions

The numbers of conditions that registrants selected are represented as percentages of those reporting 1 condition to the maximum 7 conditions. We also have evidence of high amount of co-morbidity amongst these conditions. Greater than 71% of people have 3 or more conditions, each with their own set of symptoms and challenges that when combined can be devastating, Table 3.

Table 3. Number of Co-Morbid Environmental Sensitivity Conditions

Conditions

Number

Percentage %

0

1

0.5

1

16

8.6

2

37

19.9

3

46

24.2

4

40

21.1

5

28

15.1

6

16

8.6

7

5

2.7

8

0

0.0

Characteristics of Respondents

Current Age groups of those registering

The average age of people currently registered is 52 years, with a minimum age of 7 years and a maximum age of 84 years with a mode of 62 years, (Table 4). The mode indicates an approximate age given for most respondents.

Table 4. Current Age Groups of Registrants

Age group

Number

Percentage (%)

0-15

5

2.7

16-30

5

2.2

31-45

49

26.1

46-60

78

41.5

61+

51

27.1

Environmental sensitivities can develop at any age, (Shannon et al 2003; Woolf, 2000) and increase with age (Sears, 2007). The increasing prevalence of sensitivities is relevant for young children just starting their life in society, young professionals in the prime of their working careers, the aging workforce, as well as care for the elderly. A survey of over 5,000 parents in NSW determined that 2.5% of 2 to 15 year olds had been diagnosed with MCS and is similar to the percentage (2.9%) seen for adults (NSW Health, 2007-2008).

All age groups are represented in this study and are consistent with published data. The largest number of registrations have come from the 45-60 age group, people who are in their most productive years with ongoing careers, house payments and children at school all of which requires a steady reliable income.

Diagnosis

The number of registrants have been diagnosed with one or more condition is 149 (78.4%) compared with41 (21.6%) without any diagnosis. The reported onset of Environmental Sensitivities and the diagnosis of conditions are variable. Some have been diagnosed with different conditions as they are progressively recognised. From food sensitivities in 1984, followed by celiac disease in 1996 and fibromyalgia in 2014; or pesticide sensitivity in 1987, followed by perfumes, fragrance sensitivity in 1997; or MCS 1986, followed by CFS/ME in 1995 and fibromyalgia in 2015.

There are many for whom the symptoms of conditions developed many years before any formal diagnosis was made, for some it took 25 years for any sort of diagnosis. Many have had conditions such as food intolerances, chemical sensitivities, fragrance sensitivities since childhood. This is similar to overseas data where several years elapsed before they received a diagnosis. For greater than 50% of the respondents it took 4 or more years and for 19% it took greater than 10 years (Halapy and Parlour, 2013).

There are those who have found that alternative therapies to help and others have by necessity researched their condition to find a diagnosis and means to improve their lives. This trend is consistent with the Halapy and Parlour OCEEH report, 2013, where their data suggested that people are looking for effective care and therapies outside of conventional medicine (Halapy and Parlour, 2013).

A number of people are unable to attend physicians who specialise in Environmental Sensitivities for a diagnosis due to the lack of knowledgeable physicians, distance required to travel to doctors, and the cost of consultations that do not attract medicare rebates.

Part Diagnosis is common, they may be diagnosed for one condition such as MCS or CFS, but not for any other of the conditions they have symptoms of such as EHS. Others have self-diagnosed environmental sensitivities but may have a diagnosis of allergies and asthma.

The delay in diagnosis can mean a worsening of their original conditions that may lead to development of other chronic conditions or sensitivities.

Onset and duration of conditions

Age at which Environmental Sensitivities first developed

One hundred and seventy-two people (78.4%) could identify when their condition/s developed. The age at which Environmental Sensitivities first developed range from an average of 35.1 years, with a minimum of 0 years (from birth) and maximum of 76 years. The mode at which their Environmental Sensitivities developed was 41 years. The age affected in this register is similar to that in the Halapy and Parlour OCEEH report, 2013 where the majority of those affected are ages 45-64, Table 5.

This suggests that many became afflicted during their most productive work and family years. Some registrants commented that they felt they were born with it, perhaps suggesting a genetic component and triggered by an exposure or event ‘tipped’ them over the edge. As more women than men are affected this has an implication for parenting and family structure etc. The Environmental Sensitivities conditions described in this report occur among younger children, < 10 years, these conditions have the potential to impact peoples’ lives from a very early age. One registrant commented “caring for my primary school-aged kids: I can do this as I am fortunate enough to be renting a home I can tolerate (although not well). However, due to the issues mentioned above (difficulty in accessing public places), their lives and outings outside the home are necessarily limited to places and regularity I can tolerate. For many people with ES, particularly if homelessness has occurred as a result of their condition, this equates to loss of custody/access to their children also – not because they are any risk to their children but because they don’t have access to safe resources to enable them to provide the requisite care. This has major mental health implications for both the person with ES and their children”. This is an intolerable situation for both the parent and the children.

Table 5. Age when developed Environmental Sensitivities

Age when developed

Number

Percentage (%)

0-10

11

6.5

10-20

14

8.2

20-30

44

25.9

30-40

59

34.7

40-50

17

10.0

50-60

19

11.2

60+

6

3.5

Specific events that triggered or worsened their conditions

The types of triggers reported are;

For those with EHS their health deteriorated and their condition worsened with the installation of Smart Meters, MRI investigations, cell tower exposure, mould exposure, or after years of working with communications equipment.

In the Halapy and Parlour, 2013 report specific triggers were also evident such as chemical exposures in their workplace and personal space. For others their onset was slow over many years. (Halapy and Parlor, 2013).

Duration of the condition/s

The length of time people have had their condition/s range from a mimum of 1 year to a maxium of 76 years with an average of 16.8 years with and a mode of 4 years, Table 6. A chronic medical condition is defined as lasting for more than 3 months. Many with Environmental Sensitivities (77.3%) have had their condition/s for > 5 years and provides evidence of the chronic nature of Environmental Sensitivities.

Of those who had developed the condition within the last 5 year, some of the triggers reported were new office building triggers, water-damaged buildings, increasing EMF, a lifelong condition that worsened due to smart meter installation, and/or chemical exposures.

Duration (years) with the Condition/s

Table 6. Duration (years) with the Conditions/s

Duration with the Condition/s

Number

Percentage (%)

0-5

39

22.7

6-10 years

37

21.5

11-15 years

20

11.6

16+

76

44.2

The prognosis for Environmental Sensitivities patients is variable but many will improve in the course of time, especially with an appropriate management plan. However, symptoms may fluctuate and relapses can occur. Early intervention, positive diagnosis, avoidance of chemicals, EMFs and other irritants that trigger symptoms can result in a better prognosis. A significant proportion of patients will remain quite debilitated for long periods of time. Depending on the severity of their sensitivity levels some may never recover and so require ongoing support. Many others may improve sufficiently to return to a relatively normal life. Early diagnosis and avoidance are paramount to managing and preventing symtpoms of for example chemical sensitivity becoming Multiple Chemical Sensitivity

The long duration of these conditions is similar to those reported in the OCEEH report with symptoms occuring for years, up to 17, before diagnoses were made (Halapy and Parlour, 2013).

Environmental Sensitivity Co-conditions

All of these conditions produce devastating symptoms that can lead to total disability. Our study shows that a number of Chronic Environmental Sensitivities occur concomitantly, and is consistent with published data (Table 7). Halapy and Parlour, 2013 concluded that as the severity (of Environmental Sensitivity conditions) increases, there is generally more co-morbidity and many people have two or more conditions simultaneously.

Here we show that there is a high association of Fragrance Sensitivity with all conditions. The ubiquitous use of fragranced products such as cleaning products, perfumes, air fresheners etc in most public building is resulting in a negative impact on people with Environmental Sensitivities. Accessing hospitals, medical facilities, educational or recreational facilities becomes difficult to impossible. This is aside from the impact on relationships or social interactions leading to isolation and loneliness.

In this study Food Intolerances are also common to all Environmental Sensitivity Conditions, meaning that people need to be able to be able to afford or obtain medically-­indicated food or tolerated foods (such as organic and gluten free).

Table 7. Environmental Sensitivity Co-conditions

Environmental Sensitivity Conditions

Co-conditions percentage (%) of those with the condition

MCS

CFS

EHS

Fibromyalgia

Fragrance sensitivity

Food Sensitivity

MCS

—

47.2

39.6

29.6

88.2

78.5

CFS

81.0

—

39.3

51.2

81.0

81.0

EHS

71.3

41.3

—

26.3

65.0

65.0

Fibromyalgia

77.8

79.6

38.9

—

83.3

87.0

Fragrance Sensitivity

89.4

47.9

36.6

31.7

—

79.6

Food Sensitivity

86.3

51.9

39.7

35.9

86.3

—

Table 7. Environmental Sensitivity Co-conditions continued

Environmental Sensitivity Conditions

Co-conditions percentage (%) of those with the condition

MCS

CFS

EHS

Fibromyalgia

Fragrance sensitivity

Food Sensitivity

Lyme Disease &/or it’s co-infections

55.6

61.1

55.6

44.4

61.1

72.2

Biotoxin-related illness

84.6

84.6

61.5

53.8

53.8

61.5

What was not expected was the high association of Lyme Disease and/or it’s co-infections and Biotoxin-related Illness with other Environmental Sensitivity, we will need more numbers to see if this trend is consistent (Table 7 continued).

Hardships experienced with Chronic Environmental Sensitivities

In OCEEH report into Recognition, Inclusion and Equity Report they concluded that these conditions display ‘an illness burden similar to that of heart disease and greater than that of cancer and diabetes.’ They state that “Measures of functional impairment indicate that people with ES/MCS, FM and/or ME/CFS are at least as disabled and in some cases more disabled than people with other well- ‐known chronic conditions. The levels of unmet health care needs were greater than for our comparator groups. These findings combined with unmet home care needs and less than ideal proportions receiving home care services may indicate people with these conditions are receiving ineffective care or are experiencing barriers to or deficits in care. People with these conditions are experiencing socioeconomic disadvantage as demonstrated by high levels of moderate or severe food insecurity and sizeable proportions with low annual household income (Burstyn and MEAO, 2013).”

Hardship Categories selected by Environmental Sensitivity registrants

During the course of collecting numbers of people with environmental sensitivity conditions it became evident from the comment people were making that we need to collect specific data on the impact on their lives and verify if this data is comparable to published studies (Table 8). Since adding in this question we have 114 responses.

Table 8. Hardships selected by Registrants

Hardship

Number

Percentage %

Medical assistance

87

76.3

Housing

64

56.1

Education

50

43.9

Employment/Income

88

77.2

Social Services

46

40.4

Accessing public places

74

64.9

Relationships/social interactions

99

86.9

Other

44

38.6

Total answered

114

Number of Hardships

We have found a high number of people (86%) have difficulty in 3 or more hardship categories that covers aspects of normal living, Table 9.

Table 9. Number of Co-existing Hardships

Number of hardships

Number

Percentage %

0

1

0.8

1

4

3.6

2

9

8.2

3

17

15.5

4

21

18.6

5

19

16.8

6

15

13.3

7

14

12.4

8

14

12.4

Profile of Level of Impairment.

The results of this study on the effects/life impacts of Environmental Sensitivities show that these conditions are pervasive and include

Damage to income and work resulting in joblessness and financial destitution, leading to problems with affordable housing, modification to existing home, some facing homelessness and destitution;

Problems with relationships and lessened social support with difficulties meeting with other people because of their personal use of fragrances, use of a mobile phone or stigmatisation by others who do not understand or believe these conditions;

Difficulty with access to medical care and community resources. Problems with finding a doctor who understands sensitivities or safe medical facilities.

Diminishing relationships and social interactions. These individuals and their families often live in social exclusion and economic difficulties.

Limited to no access to public places such as restaurants, hospitals, libraries, shopping complexes, education facilities, recreation facilities etc.

Debilitating symptoms, largely bed ridden, home bound and isolated from friends, family and society.

These results are similar to published literature on the burden impacts found in other studies.

Their rights to medical care, the right to earn an income, access to affordable and safe housing, access to an education and access to public places are denied to them because of their conditions, placing an added strain on already difficult and disabling medical conditions.

Hardships selected by Environmental Sensitivity Condition

The areas of hardship are consistent across all conditions with difficulties with Relationships and Social Interaction the highest amongst all. Access to medical care and employment/income is also a major problem for many people (Table 10).

Table 10. Hardships selected by Environmental Sensitivity Condition

Hardship

MCS%

EHS/ES%

CFS/ME%

Fragrance Sensitivity %

Fibromyalgia%

Medical assistance

57.9

34.2

43.9

57.0

31.0

Housing

45.6

28.1

24.6

39.5

19.5

Education

29.8

24.6

19.3

28.1

14.2

Employment/Income

58.8

31.6

38.6

57.9

25.7

Social Services

31.6

21.1

19.3

31.6

17.7

Accessing public places

51.8

33.3

32.5

52.6

23.0

Relationships/Social Interactions

68.4

38.6

46.5

64.9

32.7

Other

29.8

20.2

21.9

30.7

11.5

All conditions have difficulty with all of the listed hardships. For all conditions the percentage suffering hardships with relationships and/or social interaction are highest. This is many due to the ubiquitous use of fragranced products or EMF emitting devices.

Fragrance Sensitivity and MCS showed the highest percentages for all hardships. The percentage of hardships for Fragrance Sensitivity and MCS are – relationships/social interaction (64.9 and 68.4 respectively), followed by Employment/income and Medical assistance (57.9 and 57.0 respectively) for Fragrance Sensitivity and 58.8 and 57.9 respectively for MCS. This is not surprising considering the ubiquitous use of cleaning chemicals, perfumes, pesticides etc that are barriers that create hardships.

In the South Australian study (Fitzgerald D., 2008) 6% of those reporting hypersensitivity stated that it seriously affected their quality of life, with 8.4% males and 15.7% females reporting moderate to severe problems. Within the hypersensitivity group, 15.3% males and 31.9% female participants stated that they had received medical treatment for their chemical sensitivity (Fitzgerald, 2008).

The Australian paper on the health and societal effects from exposure to fragrance consumer products found that of the 33% reporting health problems when exposed to fragranced products, “more than half (17.1%) of these could be considered disability under the Australian Disability Discrimination Act” and fragranced products were found to hinder access to public places such as restrooms and businesses (Steinmann, 2017).

Other Hardships

The other areas that individuals indicated they have difficulties with were generally an extension of accessing public places due to exposures to fragrance, other chemicals or electromagnetic fields.

A lack of understanding of the condition and the consequences of a chemical or EMF exposure to the individual by medical staff. When making an effort to avoid triggers that cause adverse health effects people feel that staff are not taking their concerns seriously and consequently suffer from exposures. “ There are no safe environments (chemical and EMF free) for people to wait for appointments.”

Lack of knowledge by GPs and Specialists. There are few GPs or specialists who are knowledgeable about Environmental Sensitivities. Those that are often expensive, do not bulk bill and Skype and Phone Consultations do not attract a Medicare rebate.

Many have seen multiple GPs and Specialists with no diagnosis or effective treatments and have given up. Some have found alternative therapies to help.

Misdiagnosis and inappropriate and harmful treatments. “Took over 25 years to diagnose Environmental Sensitivities and was by then a Universal reactor stage. Was treated badly by medical professionals and told symptoms were in my Psychiatric and psychological treatments made symptoms worse with medications producing horrendous side effects – was pumped with more. PLEASE STOP THIS MEDICAL MADNESS”

Others have taken years for a diagnosis by which time they are severely disabled

Some have found alternative therapies to help and many have by necessity researched their condition to find a diagnosis and means to improve their lives.

“There are no pills for these ills. And that is a blessing in disguise because I’ve found that holistic living (diet, exercise, lifestyle upgrades) make it possible for me to have hope.”

Again this is similar to the OCEEH report where unmet health care needs are found for all three conditions EHS, MCS, CFS/ME with many more women likely to consult with alternative health care providers. (Halapy and Parlour, 2013).

They are unable to get a diagnosis for their conditions, or unable to access doctors rooms because of perfumes, cleaning products etc or electromagnetic radiation from wireless technology.

They are unable to find a doctor with knowledge of Environmental Sensitivities or get treatment for other medical conditions that require medical treatment. Access to medical services such as dental, pathology, physiotherapy, eye specialists etc are also difficult. The barriers to medical assistance might be physical barriers, chemical contamination, EMR contamination, cost of services, or eligibility for services.

The difficulty in finding a doctor who understands their sensitivities and fear of possible harm from chemical or EMF exposures in the health care setting is reflected in the Gibson 2015 study of 465 people with the Environmental Sensitivities, Chemical Sensitivity and EHS. Other common themes are an inability to afford doctors services, do not feel well enough to go or have no transport. In this same report the degree of distress on a scale from 0-10 with 10 being most distressed, the men level of reported distress was 7.5 for unmet primary health care needs. (Gibson, 2015).

Housing

There are difficulties finding affordable safe housing away from sources of EMF and free from chemical triggers in building materials, paint, new carpets, pest treatments. Renting properties is difficult because of the requirements for pesticide treatments when a tenant leaves a property, or neighbours use of toxic chemicals. Residual pesticides are a very real problem for those with Environmental Sensitivities such as MCS. There is a denial of rights to accommodation and public services, people suffer from stigma and institutional denial.

In many cases this meant staying at home where they have some measure of control of their environment and experiencing isolation.

Other location issues were

Neighbours use of chemicals and/or wi-fi devices

Proliferation of mobile phone towers

Proliferation of Wi-fi hotspots

4GX mobile transmission

Smart meters. Some registrants have had to move from Victoria to other states after the installation of smart meters that they report adversely affected their health and triggered or exacerbated their EHS.

The high usage of EMF emitting devices in many to most locations is becoming a real problem for those with EHS.

Where unemployment has resulted from developing their condition they have no money and are unable to move, renovate their existing home, or buy their own home or find suitable rental properties.

Others feel they are stuck where they are despite their issue/problems with proximity of phone towers, hot spots or chemical usage. They do not have the money or resources to move and do not know where to move to.

Employment/Income

There were comments that the proliferation of chemicals and EMF in the workplace has meant that they cannot work, or have been made redundant after disclosing their sensitivities. Most felt they were now unemployable.

Environmental Sensitivity Conditions are not understood in the community and consequently people are not being believed and suffer ridicule and bullying as a result. For one who is trying to manage in the workplace:

“I suffer daily in my workplace…. they do not take it seriously and I feel victimised, bullied by certain people occasionally and very isolated. I have even been told by my Leader, ‘Maybe this isn’t the job for you?’”

A lack of financial security adds to the personal distress and can place extra strain on relationships and families.

Many are too sick to be able to carry out minimal activities of daily living and are not able to work. Due to lose of employment and income some may lose their home and find it difficult to find affordable safe housing. Some have been forced from their employment, others are bullied and ridiculed and feel that they are now unemployable. They are unable to get disability pensions and other economic help is denied to them. Assistance and/or a disability pension require the assistance and support from a doctor who has an understanding of the conditions.

Economic insecurity is a major issue linked to a lack of recognition which means difficulties in obtaining workplace accommodation and lack of disability coverage. This denies sufferers an income and the ability to live without social assistance, or parents unable to pay for a child’s higher education.

Education

Education facilities and libraries are increasingly using new wireless technology. For those with EHS these facilities using wi-fi technology are unavailable for them.

For those with MCS the prevalence of perfumes and other chemicals were found to be a barrier.

Two secondary school aged children who are very sensitive to EMF may need to be home-schooled in order to avoid it.

Social Services

There were difficulties in attending Centrelink [Australian welfare] centres due to use of chemicals and EMF exposures

As there is no recognition of Environmental Sensitivities Disability Support pensions are not accessible.

Many are unable to obtain a medical certificate or letter from a GP [medical doctor] to support their case which leads to difficulties in obtaining support for disability pensions or Workers Compensation cases.

Accessing Public Places

We have reports of problems accessing public spaces such as shopping centres, medical centres, entertainment centres, public gatherings, parks etc. Most public places are inaccessible to some degree. The barriers include chemical use (particularly high levels of fragrance, cleaning chemicals, pesticides, and so on) and EMF exposures from mobile phones and wi-fi technology. This includes libraries, Medicare offices, Centrelink offices, hospitals, shops, cinema, churches, government buildings and council chambers to name a few.

Many parks, beaches and other external environments are inaccessible due to regular use of glyophosate and other herbicides and EMF from mobile phone towers, Telstra Air and free wifi hotspots. There are also problems with cigarette smoke, new furniture, new carpet, cleaning fluids, printers, fragrances, air fresheners, diesel fumes in public places both indoors and outdoors.

The issue of accessibility to a safe environment is important for both employment and accessing public places. To avoid these debilitating exposures people stay at home and are housebound and isolated.

For both workplaces and accessing public places there is the issue of accessibility to a safe environment

Most public places are inaccessible to some degree. The barriers include chemical use (particularly high levels of fragrance, cleaning chemicals, pesticides, and so on) and EMF exposures from mobile phones and wi-fi technology. This includes libraries, Medicare offices, Centrelink offices, hospitals, shops, cinema, churches, government buildings and council chambers to name a few.

To avoid these debilitating exposures people stay at home and are housebound and isolated.

Where possible, people used online services for shopping.

Many parks, beaches and other external environments are inaccessible due to regular use of glyophosate and other herbicides and EMF from mobile phone towers, Telstra Air and free wifi hotspots.

There are also problems with cigarette smoke, new furniture, new carpet, cleaning fluids, printers, fragrances, air fresheners, diesel fumes.

Relationships/ social interactions

Isolation was a common theme.

A large number of people have little to no social interactions and have difficulty forming or maintaining relationships due to the complex nature of their conditions and a lack of understanding by the general population. Some are particularly isolated from public, family and friends, and are no longer able to work

Even when family and friends acknowledge the problem and do not wear a perfume, there are other layers of fragrance. The use of soaps, shampoos, conditioners, deodorants and washing machine products that leave traces of fragrance that makes it difficult for them to comply. They often cannot smell the background levels of fragrance that these products leave.

The use of wi-fi and mobile phone usage is ubiquitous in the community, family, friends and visitors often carry a mobile phone and have them switched on.

Many relationships break down due to scepticism by the partner or unable to live with the necessary changes that need to be made. In the same way people are isolated from family and friends and find in difficult to participate in any social activities. They cannot participate in hobby activities, further education or other social contacts

The results of this analysis show that it is time for the medical profession, workplaces and society at large to start paying attention to those with Environmental Sensitivities. People with these conditions face challenges in their experience as patients trying to obtain a diagnosis and treatment to living with the long term impacts of a chronic condition. Environmental Sensitivity individuals suffer from stigmatisation in clinical settings, the workplace and other areas of their lives as a result of general lack of understanding of these complex conditions by the medical profession and wider community. A consistent pattern in relation to Environmental Sensitivities clearly emerged across a variety of factors related to measures of disability, socioeconomic status, health care utilization and unmet health care needs. These conditions affect all ages, from the very young to the elderly and disrupts all aspects of a persons life. People are feeling alone, isolated and unable to do anything about it.

The physical and emotional challenges of day-to-day life have become the new norm for people with Environmental Sensitivities. The effects/life impacts of Environmental Sensitivities show that these conditions are pervasive and include damage to income and work resulting in joblessness and financial destitution; potential homelessness, problems with relationships and lessened social support; access to medical care and community resources. These individuals and their families often live in social exclusion and economic difficulties.

They are chronic and disabling conditions that are not well understood by the medical profession or the general community and have a negative impact on all aspects of their lives. It affects their ability to function normally in society. While many chronic disabling conditions are known to be associated with older age (eg cancer, heart disease and stroke) Environmental Sensitivity conditions are common amongst middle aged i.e. when they have potential to be highly productive, employable and contribute to the economy and society.

As Environmental Sensitivity conditions are largely misunderstood by medical practitioners and the general community this means that for people with ES their basic medical and social needs go unmet. Because of this lack of understanding people are constantly being made ill when trying to access services or a workplace.

Income support from welfare services is insufficient to provide for their special needs in housing, disability aids, or medical aids etc. Food and nutrient support is often required as food allergy/intolerance is often a coexisting factor along with inability to take many medications. There are many who have lost their income, do not qualify for Disability Support pensions and cannot afford Air filters, water filters, organic food that they need and their condition prolonged and worsened.

The high association of fragrance sensitivity with many of the conditions, has meant that access to many premises is difficult with the high usage of perfumed products such as cleaning products, personal care products and similar, in most public buildings including medical facilities, hospitals and educational facilities. Those with MCS, Fragrance Sensitivity and EHS were the most impacted in their ability to access medical assistance, accessing public places, Employment and Relationships/Social Interactions. Fragrance has become the new second-hand smoke problem and needs to be addressed by government and health care agencies to reduce their usage.

While waiting for the controversy over Environmental Sensitivity diagnostic criteria to be decided and acceptance into mainstream medicine, people are suffering and will continue to suffer hardship and ill health. Early recognition, clean air, food and water and avoidance of symptom-triggering agents and modification of their homes are necessary for people to successfully live with their condition. The prognosis for Environmental Sensitivities patients is variable but many will improve in the course of time, especially with an appropriate management plan.

Environmental Sensitivities should be included in the medical course curriculum and Continuing Medical Education (CME) process to ensure that all physicians are educated in how to diagnose and manage Environmental Sensitivities. Physicians with experience with environmental sensitivities claim that diagnosing and treating environmental sensitivities early often stops the illness in its tracks (Kassirer and Sandiford, 2000; Genius and Lipp, 2011; Genius and Tymchak, 2014). Dr G H Ross of the Environmental Health Centre, Nova Scotia, Canada, a specialist in diagnosing and treating Environmental Sensitivities claims the chronic cases he sees are the result of the failure to diagnose and properly treat environmental sensitivities (Kassirer and Sandiford. 2000).

Health services can help by modifying their rooms to avoid triggers. Restricting the use of fragranced products can help more people than those with ES. The Steinmann, 2017 study where the common adverse effects of fragranced products included respiratory problems, mucosal symptoms, asthma attacks, migraine headaches amongst others. (Steinmann, 2017).

The Canadian Medical Association Journal, in 2OI5 says, “Artificial scents have no place in our hospitals”, about 30% of people report having some sensitivity to perfumes worn by others, 27% of people with asthma their condition is aggravated by artificial scents, particularly concerning for hospitals patients with asthma or other upper airway or skin sensitivities are concentrated. “We have much to learn about the mechanisms underlying scent sensitivity, but we know enough now to take precautionary measures in our hospitals.” Their recommendation – “Hospital environment free from artificial scents should become a uniform policy, promoting the safety of patients, staff and visitors alike.” (Flegel and Martin, 2015). They note that for those with asthma there are a range of irritants that are not categorized as allergens, such as second hand cigarette smoke, cleaning fluids (bleach), perfumes and other strong odors. This precautionary measure should also be extended to other health facilities and aged care facilities. The US Centers for Disease Control and Prevention, Indoor Air Quality Policy (CDC, 2009) states that “Scented or fragranced products are prohibited at all times in all interior space owned, or leased by CDC”.

The Medical profession can greatly assist people with Environmental Sensitivities with letters of support rather than medications to which many people with ES are sensitive. Letters or paperwork can assist with social welfare services such as In-home support, Carers, Unemployment benefits, Sickness benefits , Disability support, Compensation payments for workplace injury, Referral to specialists, physiotherapists and OTs etc – ES patients are likely to have other chronic health issues that require specialist care or other type of intervention., Government Housing suitable for Environmentally Sensitive patients, Home schooling , Disability parking , Assistance with medical aids e.g. wheel chair, oxygen at home, Aged care or respite services, Pain management services, Chronic illness/loss/grief counselling, Social workers, Rehabilitation, and Ambulance transport services.

The high usage of products such as cleaning fluids and co-workers perfume, new carpet or photocopier fumes, or wi-fi technology and mobile phones can make the workplace a dangerous place to work. If an employer does not understand and take measures to ensure a safe workplace people are forced from their jobs or risk further health problems. Employees can assist by modifications to the workplace and consideration by both the employees and co-workers that will allow people to be productive and self-sufficient.

Social support is critical for those with chronic health conditions. Individuals with lower levels of social support are known to suffer more symptoms and greater mortality while a higher level of support indicates better psychological wellbeing. Individuals with MCS scored lower than healthy people and some with diabetes and multiple sclerosis (Gibson. 2000). As with other forms of chronic illness, Environmentally Sensitive patients have difficulty maintaining social contact due to pain and functional disturbances. Social Services can assist by understanding the problems and provide eg Home Care staff without wearing perfume or using fragranced and switching off their mobile phones.

Burstyn V and the MEAO, 2013. Recognition, inclusion and equity – The time is now: Perspectives of Ontarians living with ES/MCS, ME/CFS and FM, Complete Report/Appendix to the Ontario Centre of Excellence in Environmental Health (OCEEH) Business Case. Available online: http://recognitioninclusionandequity.org/resources/

Molot, J., MD. (2013). Chronic complex conditions: Academic and clinical perspectives. Ontario Centre of Excellence in Environmental Health (unpublished); the clinical submission to the Ministry of Health and Long Term Care, supporting the Ontario Centre of Excellence Business Case.

Michellina Van Loder is a Professional Writer, Journalist and Blogger. This is where she shares her tales about trail blazing her way out of the Labyrinth of Chemical Sensitivities and Mould. This is also where you will find the latest Research on related topics.

Newsletter

First Name

Last Name

List ChoiceThe Labyrinth ~ and finding my way out List

Email address:

Receive New Posts via Email

Enter your email address to subscribe to this blog and receive the latest news on Multiple Chemical Sensitivity, Environmental Illness and finding our way out of the Labyrinth of chemical sensitivities by email.

Information, products and views presented by guest bloggers @The Labyrinth are not necessarily the same as those held by this blog's author, Michellina van Loder. Reviews are my own personal opinions (unless stated otherwise); and satire is used throughout personal posts. Any health topics discussed are not to be taken as medical advice. Seek out medical attention if needed and do your own research; however, you're welcome to use mine as a start.